AIM RSF DECODE
DECODE is a collaborative research project funded by the National Institute for Health and Care Research (NIHR) that brings together researchers, clinicians and patients from seven UK universities and partner hospitals (Loughborough University, Leicestershire NHS Partnership Trust, University of Leicester and, Swansea University, Kings College London, University of Plymouth, De Montfort University, and University of Nottingham) to Develop and Enhance the Care coordination for people with intellectual disabilities and multiple long term Conditions (DECODE).
Aims of the research
We will use computer programs, called machine learning, to learn more about MLTCs in people with intellectual disabilities. We will find out which conditions are more likely to occur together and what happens over time. This information will help us to develop a new way of providing the care for people with Intellectual disabilities and MLTCs which would be better co-ordinated, effective and timely.
Design and methods used
Our research combines Healthcare Information (data) and what we hear from experts. The experts include Experts by Experience (people with intellectual disabilities and their carers) and Professional Experts.
1. Healthcare information (data)
We will use healthcare data on people with intellectual disabilities from England and Wales to find out:
· MLTCs that tend to occur together, and
· What happens to some of these MLTCs over time and the role of factors, like lifestyle habits of people and their financial and social situations.
2. Input from Experts by Experience
People with intellectual disabilities, their families, and carers will either act as research partners (as part of Public and Patient Involvement groups) or as research participants. We will recruit research participants for workshops or interviews where this is needed. They will help to:
· Decide on the most important MLTCs affecting the lives of people with intellectual disabilities.
· Make recommendations about the care of people with MLTCs.
· Produce visual information such as graphs and infographics specially designed for people that will use them, including people with intellectual disabilities. When we have finished this work, we will propose a new model which aims to improve care and support for people with intellectual disabilities and MLTCs.
Patient and Public Involvement
We have worked closely with people with intellectual disabilities and their carers to develop this project. We are currently training a group of people with intellectual disabilities to become research partners. Our work with these groups of people helped us understand the support they need to take part in the research.
Continued involvement of patients and members of the public will be supported by our carer co-applicant, charity partners and Sense College, a local college supporting people with intellectual disabilities.
Further detail about this research is available at https://decode-project.org/research/ .
Link to our Public website: https://decode-project.org/public/
Dissemination
As well as research publications, our findings will be shared via social media, our charity partners, intellectual disability conferences, and national committees that contribute to guidelines.
Take part in our research: https://decode-project.org/public/take-part/